Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Saturday, October 18, 2008

I just read an outstanding commentary about Sarah Palin by Christy Everett entitled "I know nothing about special needs" at Parents.com (see Following Elias, The Boy that Could Fly). I approach disability rights from a cultural viewpoint and try to maintain an even temper despite the fact I am directly affected by disability based discrimination. I try to sway people with facts and a firm civil rights agenda. This approach does not work all the time but it suits my personality and background as an anthropologist. Yet I enjoy reading the work of others who write in a far more emotional manner. Perhaps this is why I often read blogs written by parents who have a child with "special needs", a term I detest that, thanks to Palin, is being bandied about in the Presidential campaign. I was very moved when I read the following written by a parent of a boy with multiple disabilities:

"For McCain to say that Sarah Palin “understands special needs better than almost any American I know” just shows how out of touch he is with the disability community.

Does he know anyone with special needs?

Because surely they would know more about living with disabilities than the people who love them.

To claim that a new mother of a child with Down syndrome knows more about special needs than any other American is an insult to the hundreds of thousands of people who every day face the barriers of an able-bodied world. Or who despite cognitive differences go on to earn a Phd. Or who play ice hockey without full sight or compose music they can’t hear. Or…

…the list goes on."

I love the last paragraph and phrase about the barriers of an able-bodied world. I know far too much about those barriers. I know barriers are needless, overwhelming and sometimes oppressive. On bad days, I truly struggle to leave my home. I do not want to encounter someone who thinks I am public property and suggests that if I prayed really hard could walk again. I do not want to have a stranger tell me it is "amazing" the way I get my wheelchair in and out of my car. What I want is illusive, the ability to blend in and be, well, ordinary. Social equality is simply not something that I experience often. I am different and in many ways proud of my difference, that is proud to be disabled. However, on those bad days my difference, my disability, feels like a chain pulling me down into an abyss from which I fear I will not emerge. It is on these bad days that I force myself to think not of myself but of all those other people with a disability that are not as lucky as I am. I live in a nice house, have a large and supportive family, am highly educated, and have a son I love very much. I thus force myself to move forward for others who find themselves stuck in a nursing home, are unemployed, alone, or simply not able to deal with social oppression. If I give up, if I accept the stigma associated with disability I fear it will create a domino affect in which one disabled person after another will fall. I will simply not let this happen.

Thursday, October 16, 2008

I did not get to see the entire Presidential debate last night because I was teaching. However, I did listen to most of the debate on my drive home. When Bob Schieffer asked about the qualifications of Palin and Biden as Vice-President I eagerly awaited an answer. I hoped that for the first time a substantive debate about disability might come up. Although not substantive, the exchange about disability between Obama and McCain solidified in my mind why Obama is the clear choice in the election.

The transcript of the debate is widely available and it is worth quoting some of it. In his answer, McCain fell back on well worn cliches. "She'll be my partner. She understands reform. And, by the way, she also understands special needs families. She understands that autism is on the rise, that we've got to reach out to these families, and help them, and give them the help they need as they raise these very special children. She understands that better than almost any American that I know. I'm proud of her".

As many have pointed out, Palin is not an expert on autism. She does have a nephew who has autism and all know her son Trig has Down Syndrome. This limited personal connection may give her an "understanding" of what is involved in raising children with "special needs" but that does not mean she has any added insight or expertise. This may come with time but to my knowledge her practical experience with disability is limited to caring for her son who is less than a year old. It appears to me she has made a connection with parents of children that have Down Syndrome but this has not translated into action. Indeed, the skeptic could postulate that Palin is exploiting these parents for photo opportunities that tug at the heart strings of those unfamiliar with disability. I also get a sense that Palin has not truly embraced or begun to get a nuanced understanding of the disability community. Again, this may come with time but as of today her failure to act, to change the rhetoric coming out of the McCain cmpaign and offer specific examples of what she would do to enhance the lives of children with special needs makes me question what she says.

The passage in the debate that is of great interest to me did not come from McCain. It was Obama's reply to the above quote that was dignified, polite, and raised the bar above partisan politics. Obama could have lobbed a nasty shot at Palin and the mean spirited comments she has made recently but graciously conceded she was a capable politician, one that has energized the Republican base. I give Obama credit for being polite, I doubt I could have held my tongue. Regardless, this statement by Obama stood out:

"I do want to just point out that autism, for example, or other special needs, will require some additional funding, if we're going to get serious in terms of research. That is something that every family that advocates on the behalf of disabled children talks about. And if we have an across the board spending freeze, we're not going to be able to do it".

Here we have a distinct and profound difference between Obama and McCain. The McCain campaign through Palin pays lip service to special needs children but offers no change in the draconian funding of programs for the people they supposedly care about. Furthermore, McCain and Palin have said nothing about the needs of disabled adults, Supreme Court decisions that have gutted the ADA, rampant unemployment and a myriad of other issues that marginalize disabled people. In contrast, Obama has a plan and a vision for how he wants to empower disabled people in both the short and long term. This is clearly presented and has been readily available for months at his website. If you do not believe me check it out for yourself. Obama's support of people with disabilities goes well beyond empty promises that are designed to generate a knee jerk response. I am not sure why Obama has such a good understanding of disability related issues. I suspect it has less to do with personal experience than it does with those he has received advice from but this is speculation on my part.

Simply put, last night provided proof positive that Obama is the clear choice for the disability community. Even if viewers were not swayed by Obama's words McCain's reply highlighted how unaware he is to the needs of disabled people. McCain replied "We need to spend more, we need to spend more, that's the answer--why do we always have to spend more?" Why do we need to spend more? Let me suggest McCain visit an independent living center, group home, adaptive sport center, rehab hospital, or a myriad of places that are grossly underfunded. There here will be exposed to a system and culture that crushes the spirit of many disabled people who want to lead an ordinary life other take for granted.

Wednesday, October 15, 2008

I am a sucker for films that involve murder, mayhem, and story lines that are out of the norm. Given this, I looked forward to seeing Quid Pro Quo, a film made by Carlos Brooks that stared Vera Farmiga and Nick Stahl. The film reviews I read all characterized Quid Pro Quo as akin to David Cronenberg's Crash. I got to watch Quid Pro Quo last night and am at a loss as to what to make of the film.

The main characters, played by Farmiga and Stahl, are Fiona and Isaac Knott. Isaac is an NPR reporter who was paralyzed in a car accident as a child. Fiona is an attractive blonde art restorer that works in a museum. Fiona contacts Knott about a group of people that want to be disabled. Characterized as "wannabes" Isaac tries to understand why anyone would desire to be paralyzed or become an amputee by choice. Two story lines emerge in this film, first, being disabled for "wannabes" is an exalted status and a wheelchair is akin to a throne. Second, Fiona is a closet "wannabe" and seduces Isaac because she has an overwhelming desire to be paralyzed. The first half of the film is captivating. Fiona and Isaac are interesting characters that draw in the viewer. Isaac is reserved and a thoughtful soul. In contrast, Fiona is a beautiful, exotic, and creepy. Their developing relationship is fascinating to watch.

From my perspective, the most interesting part of the film involves subtle and pointed comments about disability. For example, I liked the low wheelchair height camera angle that followed Isaac as he navigated the streets of the city. Another disability theme that was well done involved Isaac's dating life. Isaac's co-worker sets up a date for him and the woman he was supposed to meet walks out once she realizes he uses a wheelchair. Another scene worth noting involved Fiona's seduction of Isaac in which he declares "Yes, I can have sex". In answering an unspoken question Isaac is confronting a specific social inequity--disabled people are considered public property and expected to answer any and all questions that pop into people's minds. At the forefront of rude and intrusive questions people ask is about sex.

The problem with Quid Pro Quo is that once the relationship between Isaac and Fiona is established the film spins out of control. The story line becomes convoluted and grossly unrealistic. I understand the filmmakers intent--a role reversal in the lives of the two central characters--but the way this is accomplished is terrible. Fiona "comes out of the closet" and uses a wheelchair while Isaac gets a pair of magic shoes that enable him to walk. Worse yet, the film tries to explain the cause of Isaac's disability and Fiona's obsession with paralysis. In short, Quid Pro Quo is an interesting movie that had great potential but failed to resonate in the end.

Tuesday, October 14, 2008

As election day nears the Obama/Biden and McCain/Palin campaigns are in high gear. The rhetoric of the campaign has been building and has not yet reached its apex. In terms of disability related stories, exaggeration and falsehoods abound. If I had to pick a "winner" for misleading statements McCain and Palin are the clearly ahead of Obam/Biden. Two examples should suffice: 1. Special Needs Truth 08 pointed out an October 9 Sean Hannity interview with McCain and Palin. McCain said that many "special needs" families show up at campaign events and "Sarah Palin wants to take on that task of helping relieve the burden". Apparently in McCain's estimation Palin wants to discover the cause of autism and find a cure for it, a job she is "uniquely qualified to do". 2. According the Boston.com at a town hall meeting in Milwaukee Palin boasted that she had increased funding for programs for children with disabilities in Alaska and would do the same nationally.

On example one: Palin's son Trig does not have autism. Trig has Down Syndrome. Palin is not the least bit qualified to find a cure for autism. McCain should know the difference between autism and Down Syndrome. McCain should also know that children with autism or Down Syndrome are not a "burden" on anyone. If McCain doubts this, he should listen to what Palin has to say about her son Trig.

On example two, Palin stated she will increase spending for special needs children. McCain has stated he will not increase spending programs. In fact he often states that he would "impose a spending freeze to stop the spending spree in Washington". This line garners applause but is at direct odds with what Palin has stated.

While I do not like McCain and Palin, I will admit that within a very narrow range Palin states many good things about "children with Special needs". The Palin interviews I have seen are either conducted by media cronies such Sean Hannity who asks powder puff questions or pointed interviews in which Palin refuses to state anything beyond memorized talking points. The result is I have no clue as to whether she has the inclination or power to become an advocate for children with special needs. This is particularly confusing to me in part because Palin generates such a strong response--people seem to either love or hate her. No such reaction is evident in the disability community. Savvy disability commentators are critical of Palin because of her far right-wing positions and distrust of Republican policies. Yet, like other disabled people, I hope she does indeed become an advocate for not just special needs children but the adults they become.